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Burton Borrok Find out more about Burton Borrok
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  • Another return

    Hi folks,
    I wasn't sure where to post this, but I did want to let you know I was again amongst the functioning. I hope you don't mind my unloading.

    It seems I am at least part way back from what I guess could be construed as an ‘interesting’ experience. I’d like to piece it together for you as best I can. To start with I had my fifth angioplasty and stenting about two months ago, and it seems my tolerance of Plavix has diminished dramatically. It is usually prescribed to prevent strokes and heart attacks from the coating on the stent.

    I took to falling out of bed and smashing my ribcage on my end table and jamming my big toes in the floor making strange and wondrous black and blue marks. Then it really began. I was bleeding from my nose, my hemorrhoids, there was blood in my urine and I had diarrhea for two weeks straight. On December 16 I showed up (barely) at five AM for my dialysis treatment. I was just ‘hooked up’ when I felt terrible. They called the meat wagon and dragged me off to the hospital where my potassium was shown to have skyrocketed to over seven. They gave me a drug that made me pass everything I had eaten in the past month, did a dialysis treatment and brought the potassium level down to 2.5, so they than gave me 40 meq of potassium.

    Then came the MRI’s, the CAT scans, the daily x-rays, the semi hourly blood tests, and all the rest. My pulmonologist found ‘stuff’ in my lungs and we discussed whether my lungs should be aspirated or biopsied. I opted for aspiration with biopsy later if needed. They then gave me a drug which didn’t agree with me – to say the least. I was crazy for 48 hours with hallucinations and all. Five nurses were needed to restrain me, the firt one getting a restraint around my left wrist which he then kept yanking on. I have significant rheumatoid arthritis in that area and it was quite painful, but once they had me subdued I went out. I awoke to find a tube down my throat and the aspiration process completed. My pulmonologist said he had removed all the blood clots and sent them off to Mayo for biopsy, but the local man said he didn’t think it was cancer or some other disease. (You have to realize I was in a deep fog and not too much was making sense here.) They did confirm that I also had pneumonia and CHF. I was on a pacemaker for a while also, and there is some discussion about my getting one as my pulse was erratic and either very slow or very fast with the diastolic going from 20 – 40 up to over 120.

    They removed the tube and I tried to recover, but I was so tipsy I couldn’t even go to the john. (Those nurses have to be special gifts to the rest of us. One of G-ds better callings.) The next day had some interesting events. Primarily, in a swirl, the wall with the TV became the floor and I had to hang onto the bed to keep from falling. After a bit things rearranged themselves properly. The doctor’s thought it might be vertigo but I had that year’s ago and this was different.

    On December 23rd we celebrated our fiftieth anniversary and on Christmas afternoon I was released home. I will be getting home health care and physical therapy, but I don’t know how much they can do for me so soon. I can barely walk from one room to another. Today I went for dialysis but had to stop an hour short as I couldn’t take any more. It took a half hour to make it from the couch to my car at the curb, and I drove home very carefully. My wife is wondering if I was discharged too soon, but all the doctors are now on vacation and I think I am better off at home. Of course everything hurts – particularly my chest when I breath, and then my whole body. My legs scream when I try to walk and my arms and body are a mass of black and blue marks. So far that is as close as I’ve been to death, so I am trying to recover as quickly as possible, but not pushing it to a relapse. Hope you all had a happy Christmas season and will be treated gently in the coming year.
    Burt

  • #2
    Re: Another return

    Burt - You have certainly been thru the mill! My prayers and best wishes for you. I hope Shirley is doing better, you need to take turns caring for one another! Linda

    Comment


    • #3
      Re: Another return

      Burt,

      Sorry to hear of the tough times you are going through. Thinking of you and keeping positive thoughts.

      Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment


      • #4
        Re: Another return

        Thank you for your thoughts,
        I must tell you first and foremost that my admiration for nurses has grown considerably. They truly are a class apart. I don’t mean to defame doctors (good doctors that is) in any way, but there is a difference between saying clean that up and going in with a shovel and doing the job. Both are critical functions and neither is the lesser important.

        That said; let me move on to a question I have come home with. When I was in the hospital I heard a doctor say ‘He is in a-fib’, there also was a pacemaker glued to my ribs and activated for a time, and the possibility of a pacemaker was brought up at least twice to my memory. Now I am wondering, since I do go into a-fib from time to time, if it turns out I am in need of a pacemaker, would it be to my advantage to get a new small double unit now rather then getting just a pacemaker with the possibility of having to upgrade later? I sure would appreciate your views on this. Of course I will be waiting to hear if a lung biopsy is needed first as that would be the more pressing issue at this time.

        Now Pam, my dear friend, about your problems, there is very little advice I can offer. I have noticed with me however that I can sometimes gain relief from the a-fib, pounding and fluttering just by finding the right position to assume. You might as well try it as it might help and won’t hurt in any case.

        About the speed of your EP in helping – I’m going to put a Jewish curse on him. May he grow exceedingly wealthy and build a beautiful home with twenty bathrooms, and then may he get a stomach virus and not be able to make it in time to any bathroom in the house.
        Keep your chin up honey, - there’s a better day ahead.
        Burt

        Comment


        • #5
          Re: Another return

          Thanks Burt,

          I laughed at the curse. My Ep is a woman. You are right about the dear nurses. Where would medicine be without all the nurses working in the trenches.

          I know I will soon get cardioverted so I am trying to keep my mind away from it.

          As far as the duality. I agree an overall AICD would be the best, covering pacer and defibrilator. You should definitely bring this up to your doctor and discuss your options thoroughly. Your doctor should be considering your overall diagnosis with regards to the HCM as well. I am thinking that you may be in a very low rate of a-fib like myself. Are you on coumadin? Are they planning on cardioversion? I know for dialysis you get heparin dosing but what about for the off days? You need to have consistent blood thinning and control when you are in a-fib. I would speculate that the pacer is because of the low rate of A-fib you may have and your overall heart rate is very low and your AV node is now sick and not able to adequately send an electrical signal to your ventricles. These are all things you need to ask your doctor. Low rate of a-fib is most common in the elderly population as the av node begins to have difficulty in the electrical pathway and it can also be as a result of large doses of CCB / beta blocker.

          I hope you get the answers you need. Hang in there you are a strong man and keep fighting the battle Burt.

          My best,

          Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Re: Another return

            Burt.

            You have really gone through a difficult patch. I hope things start getting better soon. By the way. Is there anyone who can drive you to and from dialysis? It would be terrible if you were not feeling well and had an accident too. Take care.

            Leon
            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness

            Comment


            • #7
              Re: Another return

              Geepers Burt

              You have been given more than one person should have to handle at a time. It seems like a never ending saga for you.
              Prayers for you to soon be given a break and no new medical problems to occur and old ones to be ease somewhat.

              Keep us posted.
              Esther

              Comment


              • #8
                Re: Another return

                Burt, I agree with Pam an ICD would probably be what I would want. You have had it this month my friend. Should you be driving? Keep up the positive attitude as it does help.
                Midge

                Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                ICD&Pacemaker 1996
                Heart transplant March 19, 2004 @ Mayo Rochester
                Mom of Kaye.

                Comment


                • #9
                  Re: Another return

                  Burt

                  You have been through it my goodness, I hope you feel better soon you take it easy and do as your docs tell you and yes nurses are very wonderful for the great work they do, The ICD would be the best route for you if you need the pacemaker, be well my friend

                  Shirley
                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                  Comment


                  • #10
                    Re: Another return

                    Burt,
                    It sounds like you and my dad have been through a great deal of the same things this month. I know it has taken a toll on him so I can just imagine what you are going through.

                    You are in my thoughts and prayers. It is good to see you writing so well that must mean your mind has cleared up...it is really amazing what high pot. can do to your thinking!

                    Big hugs from NJ!
                    Lisa
                    Last edited by Pam Alexson; 12-28-2006, 05:58 PM. Reason: duplicate
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment


                    • #11
                      Re: Another return

                      Burt,
                      It sounds like you and my dad have been through a great deal of the same things this month. I know it has taken a toll on him so I can just imagine what you are going through.

                      You are in my thoughts and prayers. It is good to see you writing so well that must mean your mind has cleared up...it is really amazing what high pot. can do to your thinking!

                      Big hugs from NJ!
                      Lisa
                      Knowledge is power ... Stay informed!
                      YOU can make a difference - all you have to do is try!

                      Dx age 12 current age 46 and counting!
                      lost: 5 family members to HCM (SCD, Stroke, CHF)
                      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                      Therapy - ICD (implanted 97, 01, 04 and 11, medication
                      Currently not obstructed
                      Complications - unnecessary pacemaker and stroke (unrelated to each other)

                      Comment


                      • #12
                        Re: Another return

                        Thank you Lisa,
                        Your good wishes mean a lot to me. I sure hope your dad is continuing to improve. I’ve gotten so far as to be part human again. Had a good dialysis treatment today – at last, but I still have difficulty walking (with a cane) from one room to another. Shirley is a total wipeout from all the stress she’s been under, as you can imagine, and had another seizure yesterday.

                        My lips have all pealed on the inside and I have a large bruise/sore in my upper lip, both I believe from the bronchoscope, but I am still in hopes of avoiding the lung biopsy with all the tubes and cutting that involves. It depends on what Mayo says about the samples sent to them. Next week I see the Rheumatologist and get that ball rolling again, along with my PCP and cardio and pulmonologist, not to mention the home health care nurse and physical therapist. It seems that with the dialysis three times a week I’m running out of time to see all my doctors. Oh well, I guess they all need a living.

                        Now I have a question which I would be very happy to share on the board, but if you think you’d rather do it off line, please PM me. In the hospital a few things happened. They said I was in A-fib, and if that was what it was, it was not uncommon with me at all. They also had trouble with my heart rate etc, so they glued paddles on my chest and shocked me for awhile. Also, a number of times they mentioned the need of a pacemaker, so my question is this. If the shoe finally falls – would I be better off with a pacemaker for now and possibly upgrading later, or would I be better off getting one of those new small double units? I know this is only an opinion, and it’s way too soon to make any decisions until the facts are in, but I am starting the investigation and your input would be of great interest to me.

                        Thanks dearheart,
                        Burt

                        Comment


                        • #13
                          Re: Another return

                          The medical staff in this town must be centipedes because today yet another shoe has fallen. The Home Health Care Nurse was here to see me again today and it seems that getting up and walking from one room to another will cause my blood oxygen to drop to the low sixties – even while on oxygen. Luckily it will still return to the nineties in ten to fifteen minutes, but they want to make me into a basket case anyway. It’s disgusting.

                          It will be two weeks before my pulmonologist gets back from vacation and I get the results of the biopsy sent to Mayo. I’m still hoping it’s something they can do something about. Until then I guess I’ll just have to sit around and bitch to you fine folks

                          Hope you all have a great New Year, full of joy and blessings.
                          Burt

                          Comment


                          • #14
                            Re: Another return

                            Geez Burt, you gotta slow down.
                            I'm glad you made it thru all that, take it easy and stay healthy.
                            Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                            So if you are capable of thought then you are capable of great things
                            Good luck and stay well.
                            Glen

                            Comment


                            • #15
                              Re: Another return

                              Thanks Glen,
                              Today is the first day I really feel my old self again. I woke up very early and took a long, long warm shower. (I had been dreaming about it since getting out of the hospital but didn’t have the strength until now – even with the bench.)

                              Anyway, I still have a load of doctors to see, but my only worries now are if I need an implant, and what will the lung biopsy indicate. Of course with the COPD I can’t walk from one room to another without difficulties, but hope that will sort itself out soon too.

                              Take care my friend, and don’t get the flu –
                              Burt

                              Comment

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